Practice Rounds: Advice and Dissent

The case of the woman who died in childbirth still haunts and mystifies Dr. Michelle Owens.

Owens

It was an unusual case in some ways, but the patient’s lack of trust was not, and it contributed to the outcome, Owens and others believe.

“During her checkups, she’d just smile at you and then say, ‘Yeah, you know I’m not going to do that,’” said Owens, UMMC associate professor of obstetrics-gynecology.

“When we ask patients to do something, we really believe it’s going to make a difference; when they don’t listen, it is frustrating.”

For some physicians, patient non-compliance is so frustrating, and common, that they’ve been pushing back against a decades-old ethical principle in medicine: patient autonomy – the resolute respect for a competent patient’s decision-making ability.

“There is a growing opinion … that patient autonomy has gone too far, that the way we practice it in the United States is not always a social good,” said Dr. Ralph Didlake, professor of surgery and director of the Center for Bioethics and Medical Humanities at UMMC.

Dukes

Commentary in the April 2008 issue of Minnesota Medicine argues that patient autonomy has been “too successful.”

It claims that, at times, autonomy can prevent physicians from acting for the patient’s good, has dwarfed other important principles, and because it is seen as the only permissible ethical tool available, has been used even when it was wrong for the job.

Those involved in the case of the expectant mom at UMMC would probably say that it was wrong for that job.

The woman was educated and apparently of sound mind, had health insurance and no apparent religious objections to the care prescribed. She was warned that she suffered from conditions that put her at risk for bleeding, but she refused to believe it.

She bled to death on the way to the hospital.

Autonomy – the issue at the root of the case – is the flip side of paternalism, which shaped the typical physician-patient relationship of 40 or 50 years ago, when a doctor’s word was law.

Didlake

Didlake is among those who believe the turnaround has benefitted physicians as well as patients.

“It holds us a little more accountable,” he said. “I believe we practice better medicine when we honor the patient’s autonomy.”

To illustrate to his students how much medicine has changed since the days of I Love Lucy, Didlake shows them clips from movies such as The Big Bluff, a 1955 melodrama in which a physician doesn’t tell his patient she’s dying; he even enlists her family in the ruse.

“By the 1970s, the overwhelming policy among physicians was to disclose,” Didlake said.

It was the counterculture, authority-busting movement of the 1960s that helped birth autonomy.

“Also, over the years, more and more professions became professionalized like medicine,” Didlake said. Within this rising flood of expertise, doctors’ potent social status became diluted, as did acceptance of their infallibility.

Other, more recent, developments buoyed this shift: “The physician is no longer the keeper of all information,” Didlake said.

Or, as Owens put it: “When a patient decides not to do what I ask, do they not believe me, am I not conveying the message? Or do they go to Dr. Yahoo and find what they need?”

Patient access to medical information, especially through technology and social media, is a good thing, and there’s not enough of it, says patient advocate Regina Holliday, a Maryland resident who blogs about a movement known as participatory medicine.

“Once we have total access, we can be more effective,” she said. “Patients want to be part of the treatment team. They know their condition like nobody else, because they’re living it.

“In many cases, patients are not treated as an equally valued team member.”

Holliday’s activism grew from her late husband’s tragedy: Frederick Holliday II, a kidney cancer patient, fought for 11 weeks to get “appropriate care” before his death in 2009, she said.

Today his widow speaks publicly about the benefits of giving patients a final say in their care.

“Peace of mind is one,” she said. “They are able to get second opinions and seek alternative treatments. It is the right of all patients to refuse a diagnosis and recommended treatments if they are of sound mind.”

If a patient’s competency is not in question, “then you just have to respect her decision,” said Jonathan F. Will, associate professor of law at Mississippi College, founding director of the Bioethics & Health Law Center there and affiliate faculty member of UMMC’s own Center for Bioethics.

“It comes down to this: Who knows what’s in my best interest, me the patient, or the physician? There are factors other than best medical outcomes that make me me.”

Religious beliefs, the stage of a patient’s life, the family’s wishes and finances are also at stake, Will said.

Still, for others, it’s simply an unwillingness to take some, or any, of their medicine, out of fear, denial, or something else.

This is how patient non-compliance usually plays out for Kim Dukes, nurse manager for UMMC’s Surgical Intensive Care Unit: “Some patients sell their insulin for drug money. Or they trade it for other drugs.

“Usually, it’s someone who has no money for medication after a stroke,” Dukes said.

But the non-compliant mom was a new one on her and others, forcing many at UMMC to take a harder look at autonomy, even though they agree with its basis – respect for individual rights.

“You have to find a balance between giving patients a medical school lecture and giving them that level of comfort that what you’re asking them to do makes sense,” Owens said.

“When a patient won’t comply, you have to ask, ‘What are the barriers? What is the problem?’”

For Didlake, it mostly comes down to taking time to listen to the patient.Patients will experience a disease differently because of their personal stories. And that’s what the physician must discover in order to conquer what Owens calls the “barriers.”

“Illness is how you experience a disease and that is determined by context,” Didlake said. “Maybe our challenge is to more deeply understand these patients and their illness, rather than just their diagnosis.”“There is a growing opinion … that patient autonomy has gone too far, that the way we practice it in the United States is not always a social good,” said Dr. Ralph Didlake, professor of surgery and director of the Center for Bioethics and Medical Humanities at UMMC.

Commentary in the April 2008 issue of Minnesota Medicine argues that patient autonomy has been “too successful.”

It claims that, at times, autonomy can prevent physicians from acting for the patient’s good, has dwarfed other important principles, and because it is seen as the only permissible ethical tool available, has been used even when it was wrong for the job.

Those involved in the case of the expectant mom at UMMC would probably say that it was wrong for that job.

The woman was educated and apparently of sound mind, had health insurance and no apparent religious objections to the care prescribed. She was warned that she suffered from conditions that put her at risk for bleeding, but she refused to believe it.

She bled to death on the way to the hospital.

Autonomy – the issue at the root of the case – is the flip side of paternalism, which shaped the typical physician-patient relationship of 40 or 50 years ago, when a doctor’s word was law.

Didlake is among those who believe the turnaround has benefitted physicians as well as patients.

“It holds us a little more accountable,” he said. “I believe we practice better medicine when we honor the patient’s autonomy.”

To illustrate to his students how much medicine has changed since the days of I Love Lucy, Didlake shows them clips from movies such as The Big Bluff, a 1955 melodrama in which a physician doesn’t tell his patient she’s dying; he even enlists her family in the ruse.

“By the 1970s, the overwhelming policy among physicians was to disclose,” Didlake said.

It was the counterculture, authority-busting movement of the 1960s that helped birth autonomy.

“Also, over the years, more and more professions became professionalized like medicine,” Didlake said. Within this rising flood of expertise, doctors’ potent social status became diluted, as did acceptance of their infallibility.

Other, more recent, developments buoyed this shift: “The physician is no longer the keeper of all information,” Didlake said.

Or, as Owens put it: “When a patient decides not to do what I ask, do they not believe me, am I not conveying the message? Or do they go to Dr. Yahoo and find what they need?”

Patient access to medical information, especially through technology and social media, is a good thing, and there’s not enough of it, says patient advocate Regina Holliday, a Maryland resident who blogs about a movement known as participatory medicine.

“Once we have total access, we can be more effective,” she said. “Patients want to be part of the treatment team. They know their condition like nobody else, because they’re living it.

“In many cases, patients are not treated as an equally valued team member.”

Holliday’s activism grew from her late husband’s tragedy: Frederick Holliday II, a kidney cancer patient, fought for 11 weeks to get “appropriate care” before his death in 2009, she said.

Today his widow speaks publicly about the benefits of giving patients a final say in their care.

“Peace of mind is one,” she said. “They are able to get second opinions and seek alternative treatments. It is the right of all patients to refuse a diagnosis and recommended treatments if they are of sound mind.”

If a patient’s competency is not in question, “then you just have to respect her decision,” said Jonathan F. Will, associate professor of law at Mississippi College, founding director of the Bioethics & Health Law Center there and affiliate faculty member of UMMC’s own Center for Bioethics.

“It comes down to this: Who knows what’s in my best interest, me the patient, or the physician? There are factors other than best medical outcomes that make me me.”

Religious beliefs, the stage of a patient’s life, the family’s wishes and finances are also at stake, Will said.

Still, for others, it’s simply an unwillingness to take some, or any, of their medicine, out of fear, denial, or something else.

This is how patient non-compliance usually plays out for Kim Dukes, nurse manager for UMMC’s Surgical Intensive Care Unit: “Some patients sell their insulin for drug money. Or they trade it for other drugs.

“Usually, it’s someone who has no money for medication after a stroke,” Dukes said.

But the non-compliant mom was a new one on her and others, forcing many at UMMC to take a harder look at autonomy, even though they agree with its basis – respect for individual rights.

“You have to find a balance between giving patients a medical school lecture and giving them that level of comfort that what you’re asking them to do makes sense,” Owens said.

“When a patient won’t comply, you have to ask, ‘What are the barriers? What is the problem?’”

For Didlake, it mostly comes down to taking time to listen to the patient.Patients will experience a disease differently because of their personal stories. And that’s what the physician must discover in order to conquer what Owens calls the “barriers.”

“Illness is how you experience a disease and that is determined by context,” Didlake said. “Maybe our challenge is to more deeply understand these patients and their illness, rather than just their diagnosis.”